The National Kidney Foundation is the leading organisation in the US dedicated to the awareness, prevention and treatment of kidney disease for hundreds of thousands of healthcare professionals, millions of patients and their families, and tens of millions of Americans at risk.

 

Jennifer Martin is the Vice President of Program Development and she spoke to PFMD about their experience of using the Patient Engagement Quality Guidance (PEQG) and how it served to enhance their project, a major drive to encourage living kidney donation.

 

Can you describe your project in short? 

 

The National Kidney Foundation has developed a comprehensive program on living kidney donation called THE BIG ASK: THE BIG GIVE (BABG). Offered free of charge to patients seeking transplants, as well as their family members, caregivers and potential living donors, BABG is a full system of resources and support designed to provide patients with the information, tools and training to start conversations about their need for a transplant; educate patients about kidney transplants; provide support to those who are considering donating a kidney; and raise public awareness about the importance of living donation. 

 

BABG  includes in-person training workshops, post-training follow-up to offer additional resources, and an awareness campaign designed to educate the general public about living kidney donation and transplant. 

 

The newest component of this project is being developed now – it will be a “virtual version” of our in-person training workshops. The goal of this program will be to provide training to patients and families about how to share their story and educate people about their need for a transplant – all delivered in a virtual or online platform. 

 

 

Why did your project need a tool like the PEQG?

 

It’s critically important to NKF that we engage kidney patients, as well as their family, and living kidney donors, in all stages of everything we do – their voices are so important in ensuring that our programs and services meet their needs effectively. The PEQG helps us to do that by providing tangible guidance and tools to ensure that our work is truly patient-centered.

 

How did you plan to use it?

 

We are just now developing our virtual BABG program. The PEQG tool is helping us to make sure that we engage patients, families, and kidney donors at the very beginning of the process, so that their voices, experiences and preferences are at the forefront of the project. We are beginning by forming an Advisory Group of patients, families and professionals who will guide all aspects of the development, testing and implementation of our project. 

 

How was the guidance particularly applicable to your specific project?

 

Because this program will be designed for patients and families, it must be developed in close collaboration with them too. The guidance ensures that we’re not missing any critical components of how best to engage patients in this project.

 

Did you have an idea of how it would benefit the project?  

 

Yes, we knew the tool would help make the project that much better… it provides a comprehensive outline of everything needed to make sure a project is truly patient centered. It’s a “one stop” resource to make sure we’ve accounted for everything that should be done to ensure that the patient voice is central to the project.